I have to say that the last week would have been wonderful even if it wasn't free, but that did make it a little bit better.
Back at the beginning of the year, I submitted my application to the HDSA for a scholarship to attend the annual convention located in Baltimore the first weekend of June. I thought I had read that winners would be notified around the first week of April. When I didn't get an email that week, I was bummed because I figured I didn't win. So, when I got an email around April 20th saying that we were awarded a scholarship, I was over the moon. I am not sure there is even a word to describe how excited we were. HDSA covered three nights at the Hyatt where the convention took place, all convention activities as well as reimbursement of the air fare to and from Baltimore the moment we checked in at the convention registration desk.
It was made even better by learning that we could fly up the weekend before the convention and spend some time with one of Robert's brother and his wife. Since it is roughly a 20 hour drive to get to their house, it isn't as easy to hop in the car and drive over. It has been a few years since we have seen them. One of his other brothers even made a six hour drive from North Carolina to spend some time with us. Great way to start a week of vacation.
We flew up to Baltimore on Sunday, were met by Robert's brothers and spent Memorial Day on his brother's boat near the Potomac River. We then spent a couple of days with them at their house up in the mountains of West Virginia. It is all beautiful country.
Then, Thursday morning, we packed up and headed to the Hyatt Regency of Baltimore that is located in the Inner Harbor. We could see Camden Yards from our hotel - if only they were playing the Rangers instead of the Yankees this past weekend. We could also see the field were the Baltimore Ravens play but that means nothing to me.
It is a beautiful hotel and a very nice area. There are historic boats you can tour, lots of seafood places to make Robert happy and some neat shopping spots. We enjoyed walking around and checking it all out Thursday night. Then, the real reason we were there got started Friday morning.
It was 48 hours of so much useful information, so much hope for the future and even some laughs and fun times talking with people that know exactly what it is that we dealing with in our journey along the road named Huntington's Disease.
I picked up tons of materials from presenters, the different vendors and took lots of notes from the workshops that we attended. An added bonus was the caregiver support group that I went to that was lead by the HDSA social worker that oversees our local support group. We also got to dress up and attend a gala and play some fun carnival games and get tattoos. Now, those tattoos may have been temporary, but they were still fun.
I have lots of information that I received that I want to share with everyone and hope to do that over the next few months. Things like the awesome chairs we saw that are actually designed for people with a disease that has the chorea often associated with HD and the amazing info they shared about the testing of a gene silencing drug.
I will say that if you ever have the opportunity to attend the annual convention that the HDSA does each year, take it! It was so amazing that I want to go every year, even if it means I have to pay for it out of pocket.
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